©Nevus Network

The Congenital Nevus Support Group Newsletter
PO Box 305 West Salem, OH 44287
(419) 853-4525   (405) 377-3403
web site: http://www.nevusnetwork.org
e-mail: info@nevusnetwork.org

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Newsletter Number 12    Summer, 2002













 Nevus Network Surpasses 800 Members!


Our mortality rate is about 2-3% for those with a bathing trunk or torso-type giant nevus and still at 0% for those with a scalp, facial, or extremity nevus!

We now have 861 members listed in our database. This is an amazing accomplishment considering we started with 2 members in 1983 and again in 1990! Much of the information on our members is unfortunately incomplete. We plan to officially publish detailed statistics in the near future of those with complete information. If your information is incomplete, please help others, especially nevus babies, by contacting us to update your information, regardless of what other nevus groups you may be involved with or where you live world-wide. This will mean that our statistical information will be as accurate as possible. A nevus member is defined as a person with a giant congenital nevus over 20 cm or 8 inches in diameter in adulthood, 8 cm or 3 inches in an infant or a nevus covering a substantial portion of a particular location on the body, such as the face or the foot. We also have a small category consisting of persons without a giant nevus but only multiple satellite nevi.

And great news: our mortality rate for those with a bathing trunk or torso giant nevus is about 2-3%. Those with a facial, scalp, or extremity nevus can feel even better, as the current mortality rate for those types of nevi is zero in our group, whether removed, partially removed, or left “as is.” That is wonderful news! Unfortunately, those without a giant nevus and with just satellites continue to be our sickest members. That tiny subgroup has a mortality rate of about 40%. Approximately 2 out of 5 people born with just satellites will die. They are at high risk for symptomatic NCM, but no one yet seems to know exactly why. This still means 3 out of 5 of this subgroup live. That is pretty good, considering many nevus adults now living were told as children that they should expect to die before adulthood. Overall, even three out of five is a huge improvement! Clearly more research is needed. You can help improve our research by making sure your entry in our database is up to date.

Members with most number of surgeries in 2002:

1 w 90, 1 w 53, 1 w 47, 2 w 40, 1 w 32, 4 w 30, 1 w 29, 1 w 25, 2 w 23, 1 w 22, 1 w 21, 1 w 20, 4 w 18, 3 w 17, 1 w 16, 3 w 15, 2 w 14, 3 w 13, 1 w 12, 1 w 11, and 9 w 10 surgeries. 44 members are known to have ten or more surgeries.

Our statistics have been updated since this newsletter was published in 2002 and are found here: 2004 stats


All Information Provided as a Public Service Without Medical or Legal Responsibility. The opinions expressed in the Nevus Network Newsletter are those of the writers and do not necessarily reflect the views of the Nevus Network or of the medical community at large. You must not act on the medical information provided by the Nevus Network but must consult your own personal physician for all medical advice. All information is of a general nature only and may or may not be applicable to you or your child’s individual situation. © 2002 Nevus Network This newsletter may be photocopied without permission for support group and general informational use.



An Incredible Gift.... 

Editors’ Note: Karen F, age 51, had a facial nevus and is married with 3 children.

I am 51 years old and I was born with a brown birthmark on my face about 5 inches by 3 ˝ inches in size. Every doctor I went to called it something different, so I’m not sure exactly what type it was. It was smooth like the rest of my skin, but brown in color. I am assuming it was a congenital facial nevus. I tried many different types of laser treatment to remove it, which were all fruitless and expensive. I spent about $10,000 out of my pocket trying to get it lasered and it always grew back. Finally, when I was 46 years old, I went to a dermatologist willing to try the ruby laser on me. In about 15 minutes without anesthetic even being needed, she treated the birthmark. Of course, we weren’t sure what would happen. It scabbed up and when the scabs healed, the birthmark was gone. It was a miracle and it only cost $50! But we still didn’t know if it would reappear. Over the course of 3 years, I had brown spots come back every few months and had them immediately retreated with the laser. I have not had a brown spot return in about a year now. This has been such a gift of freedom for me. I also had a complete laser peel of my face to even out the two sides. The skin on the birthmark side looked ten years younger compared to the other side from wearing makeup all the time and having no sun exposure.

I have no pictures of myself with my birthmark. I looked high and low without success. I may have to look again. Part of my emotional problems comes from the fact that I was teased mercilessly as a child. One kid taunted me that I “got in a shit fight and shit stuck to my face.” My parents also did not accept me the way I was. That made it a lot harder. I never felt my mother loved me. After reading some of the stories on various websites, I have a little more understanding of her trauma. But that is no excuse. When I was ten years old, I started wearing a coverup type of makeup. Not only was I praised for covering the nevus up, but also I was expected to cover it perfectly. This is quite a lot of stress for a ten-year-old! On top of this, my father also physically abused me and my mother was an alcoholic. My father might have been, too. I just can’t remember. Obviously, I lived with a lot of family stress in addition to the birthmark.

The nevus affected every area of my life, as I would never let anyone see me without makeup. The hiding prevented me from participating in many activities and was traumatic as well when I went to college and lived in a dorm. Luckily, my roommate was my best friend, someone who accepted me the way I was. When I went to restaurants in the daytime with people, I was always aware of the light and told people I couldn’t take glare in my eyes. That way I could sit in a seat where it was darker and I could be sure they couldn’t see my birthmark through the makeup. No one could ever see it; this was just my paranoia.

I am in my second marriage for 24 years now. The first lasted 3 years without kids. I have 3 children, ages 21, 19, and 14, 2 boys and a girl, my baby. I was also afraid my children might have a birthmark, but they didn’t. Even after I was married with children, I wouldn’t answer the door if I didn’t have my makeup on. If my children wanted friends to sleep over, I felt ashamed if they saw me without make-up in my own home! I could never just roll out of bed and take my kids to school. I had to have makeup on. Sometimes, the makeup wouldn’t go on properly and I would have to do it over numerous times until it was “perfect.” I would cry, then get angry, which would only make it worse. You can imagine the scope of the emotional consequences. I’ve never felt that I was good enough, which may be why I was such a perfectionist about everything until I got into recovery. I know that having a birthmark on my face has done some good things for me as well. It has certainly kept me humble and given me the ability to empathize with others that aren’t quite “perfect.” Even today, I am still way too vain. It’s no surprise that I have bipolar disorder as well. My husband and I are very happy now that I have my bipolar disorder under control. I’m lucky there, too, because my husband adores me and has stuck with me through thick and thin. And I was never easy to live with. I’ve heard that bipolar comes from too much trauma as a child as well as a chemical imbalance and heredity. My father was also bipolar. So I’m not surprised I am bipolar. I feel lucky that I’ve had a wonderful life overall so far. At 51, I’m so excited to have my birthmark removed. It is truly an incredible gift and I wouldn’t want to go back a day. —Karen F, San Juan Capistrano, CA

Editors’ Note: Laser has had mixed results in removing facial nevi. Unfortunately, most members have not had as good results as Karen. People having laser resurfacing will typically need to use an antiseptic scrub and watch for infection and take a medicine such as acyclovir to help prevent shingles because the laser-burned skin is temporarily more prone to infection. Some members also get an uneven “polka-dot” appearance after the treatments. More research is needed. The issue of whether laser, which burns away the excess pigment with an intense beam of light, could also “rile” up the nevus cells left behind and increase the risk of cancer is still not resolved either. But we’re glad, especially for Karen, that this works well at least some of the time!


 Teen With Giant Nevus Survives School Daze

 Editors’ Note: Steve R., age 17, had a bathing trunk nevus, which was nearly all removed in 13 operations.

My name is Steve and I am 17 years old and I was born with a nevus that covered the middle of my back to my upper legs. The nevus was surgically removed through 13 very painful major operations starting at age one to about age 12. The doctors used 2 methods to remove the nevus. They used tissue expanders to remove donor skin on my legs and attach that to my back. For my buttocks, they did skin grafts. The grafts were much tougher to go through than the tissue expanders were. Basically the doctors shave off the top layers of skin, which is very painful. The grafts also left a lot more scarring than the tissue expanders did. It was a long and very tough process! But I believe that process shaped me into the person that I am today. I now have almost all of my nevus removed except for some small patches on my legs and my back. But with the removal came many scars. I have numerous scars on my buttocks and my back and legs. Growing up in a small school with scars and satellite moles and small patches of the nevus left on my body was not easy. I found myself the butt of a lot of cruel jokes and found it very hard to find friends. I would spend many nights crying in my bed because I had no friends to talk to. But I was blessed with a very supportive family. My parents were always there for me and helped me through pretty much everything. I had wonderful aunts who would always help me with the homework I had to make up after a surgery. My grandma would always bring me my favorite toys and check up on me to see how I was doing. And my grandpa would always watch the Chicago Bears with me, knowing that I would play football someday. So, with their help, I decided I wasn’t going to let the kids at school or anyone else get me down. I let everyone know I had scars and moles and I was proud of them. They showed how hard I’ve worked just to be in that school. They soon got tired of making fun of me when they knew it wouldn’t hurt me and quit. I then started making friends! And I realized that a good friend could be the best thing you ever had. Things were looking a lot better.

I decided to join a peewee football league when I was in fifth grade and I soon learned that I was pretty good. I was a larger than the average kid so I played on the line where I blocked and, on defense, I went after the running backs. Our team didn’t do very well, but it was still a lot of fun and for the first time I felt like I fit in! Now I’m starting my senior year in high school. I got my license last summer and started football practice again. I was just recently re-elected Co-captain of the varsity team, which I’m very proud of! I was also re-elected vice president of Key Club. This is a great club that does service projects and other helpful things around the area. I’m also on the student council and am throwing the shot and disc in track. I’m no longer getting made fun of, and I have many friends to share things with.

I also have a very wonderful girlfriend who doesn’t care about my scars and moles. She likes me for who I am! I love my life! So now you know my story. I decided that I wasn’t going to let them get me down, I wasn’t going to be the outcast all my life, and I wasn’t going to change the way I was to fit in. Looking back on what I’ve been through and what I am now, I feel proud and happy. I also love to talk, if you haven’t noticed, so please feel free to e-mail me. Here is my e-mail address: steve52003@yahoo.com So I leave you with these words: Try hard, be strong, and don’t change yourself for anyone. And never give up! I’ll pray for you and please pray for me. Sincerely, Steve R., Pecatonica, IL

(Editor’s note: Congratulations to Steve for surviving! Unfortunately, nevus kids will often find themselves in a destructive school environment such as the one Steve was in. Thank goodness other forms of education, such as homeschooling, now provide an alternative educational experience for those kids whose school environment is even more destructive than Steve’s was.


Trivia Question: What famous American inventor ran away from school and refused to return because his classmates teased him and his teacher called him “addled?”

Answer later on…..

Minimizing the Trauma of Doctor Visits 

Editors’ Note:BJ, age 45, has a bathing trunk nevus from shoulder blades to knees with over 1000 satellites.

Anyone with a giant nevus eventually experiences stressful interactions with medical staff. Unfortunately, this will only increase as the overall quality of our medical care continues to decrease. When I was 19 years old, I was put on “display” (with my permission, but I was too timid to refuse) in front of about 20 young male medical students. Men I might have dated were now staring at me naked like I was a freak. I wanted to do my part to help further medical knowledge, but this was too much for me at age 19. It was so traumatizing that I refused to see any skin doctors for 10 years! Now I am assertive enough to just say NO on the days I’m not up to handling such a “display.”

But even a more recent doctor visit stands out in my mind as stressful. Several years ago after procrastinating as long as I could, I made an appointment for a skin checkup by a new dermatologist I had never seen before. The doctor himself initially seemed nice. We were both involved in my skin exam and I was standing naked in the exam room with my bathing trunk nevus, my skin graft scars, and my dermabrasion scars all clearly visible. Suddenly someone opened the exam room dor without even bothering to knock and walked right in. It was the same medical assistant (MA) who had initially placed me in the room. She “spotted” me, her mouth dropped wide open at the sight of me, and she appeared speechless in shock. Unfortunately, she left the exam room door wide open so that any stranger walking or standing in the luckily empty hallway could have seen me buck-naked. I had not yet developed enough skill in self-assertiveness to protect myself, so I did nothing. The doctor, who should have known better, did nothing. The MA didn't know what to do, so she simply backed out of the room without a word. Thank goodness she closed the door behind her. In the meantime, the doctor continued the exam as if nothing had happened. Since I already knew the doctor was only given 10 minutes for my entire appointment and I really needed my long-overdue skin check, I did the same. I didn't want to make a scene, because then he might get distracted from checking my skin thoroughly. I only have catastrophic medical insurance by personal choice, so I pay for all routine medical care myself, and I wanted my money's worth! When I got home, I finally had time to think and I got angry--at the MA for her inadequate training and for her rudeness in barging in without knocking, at the doctor for not dealing with the MA, even though I realize he was an employee just as she was and had no supervisory capacity over her, and at myself for accepting it all and doing nothing. The incident brought back all the feelings of vulnerability that often resurface for me at doctors' appointments. But since I have a nonremoveable BTN, and an ideal method of making instant, natural-looking skin hasn't been discovered yet, I must cope as is, especially since my surgeries left me worse off than before. Besides, why does my skin have to look like that MA's? Why can't I look like myself? I may look different from her, but it's actually normal for me.

I didn't know what to do to prevent these situations. One day I recounted the incident to Helga, age 60, who also has a BTN. And she came up with an ingenious solution! She suggested I take some photos of myself and prep everyone about my skin before the appointment while I was still clothed and in control. Just recently I had a chance to test out this solution. My personal doctor of the previous 7 years had abandoned practicing medicine because she said she couldn't handle the stress of the job anymore. She is only 42 years old. I really couldn't blame her, as doctors and nurses are certainly under siege nowadays. But now I had the hassle of trying to find a new doctor for routine health care and for Pap tests. I hate going to new doctors! I always get very anxious when I have my Pap test since my BTN is on full display and my last one had been 2 years ago. (Editors' note: Depending on the individual, Pap tests should generally be done every 1-3 years for the prevention of cervical cancer.) I’ve learned that most health care is self-care and I try to do the best I can to avoid going to doctors except for preventive care unless absolutely needed. I spent way too much time as a child with doctors for the nevus and again as an adult for another unusual condition called reflex sympathetic dystrophy.

But I needed to go, so I picked out a new doctor and made an appointment. Then I took the Nevus Network info sheet, our poster sheet, a cute photo of me showing my nevus wearing a swimsuit, a photo of me without any clothes on at all, and a couple of anonymous photos of some of our Nevus Network poster children with me to the appointment. I felt there was more safety in numbers and I didn't want to face that new doctor all alone, so I took some of you along with me! (Thanks again to all those who have given permission to share photos.) After being taken to the exam room and while still clothed and confident, I showed the MA my photos, explained my skin to her, and requested that she show all the info to my new doctor and to any necessary staff. She initially refused. I don’t think she wanted to take the extra time required, but I insisted saying, "No, I need to prepare you and the doctor so you all will understand my situation better." I also had all my other medical info conveniently written down because I already knew my doctor was only permitted 20 minutes for the entire Pap appointment, including all the paperwork, and I didn't want to waste any of our precious time together./

Well, this worked wonderfully! The appointment went very well. The doctor was young, beautiful, and had flawless milky skin. I was middle-aged, scarred up, and bicolor brown and cream with lots of brown spots. But I was nice to her and she was nice to me. She and the MA both acted appropriately and we all worked so fast together that she even had enough time to check my skin, thus saving me a second doctor's visit and some money to boot. Now I just hope and pray that my new doctor doesn't quit like the last one AND that I don't need to go to the doctor at all for another whole year! BJ, Lake Ridge, VA


Answer to Trivia question: Thomas Alva Edison (1847-1931), who quit school before he got his first job as a newsboy at age 12 selling candy and newspapers on a train. After he refused to go to school, his mother, a former teacher, taught Edison the basics at home. Almost entirely self-taught after that, he read and studied during train layovers. Edison went on to invent the light bulb and the phonograph and hold a world record of 1,093 patents.

“We must endeavor to assist her to veil it, if not eradicate it, by the purity and brightness of her mind.”

--Quote in letter from future-General Robert E. Lee, on duty in St. Louis, to his wife, Mary, on hearing of the birth of his daughter, Anne Carter Lee, June 15, 1839, with a birthmark of her right cheek. The Lees suffered the loss of this daughter from typhoid fever, the first of their seven children to die, on October 20, 1862, when she was 23 years old. Typhoid was a very common disease during the Civil War era, with a mortality rate of about 12% prior to the discovery of antibiotics. In comparison, nevus people fortunately face only about a 2% risk of dying from a giant nevus/neurocutaneous melanosis. Lee also wrote his son, “Look upon things as they are. Make the best of them. Turn them to your advantage.” Most parents learned to cope with the loss of many children in the past. One contemporary of the Lees had 13 children—a baker’s dozen—and lost them all. When we really need examples of strength and courage in facing the loss or possible loss of a child, we can always look to the parents of the past.



Our New Slogan:

A giant nevus is sometimes better left "as is"...

We would like to thank Eva L. for her help in formulating our new slogan. Why did we come up with this slogan? Because over the years, we have noted more and more severe complications in nevus children who undergo currently available nevus treatments. A substantial number of nevus people complained they were better off before treatment than after treatment. We have members nearly dying from severe surgical infections, left partially bald, with loss of motion from scarring of arms, legs, or necks which can lead to early arthritis, with eyelids that don’t close, with life-long irritated scars, with wounds taking months to heal, with hair growing “up” rather than “down,” etc., all from surgical complications. Whether partial removal decreases the risk of cancer in those with very giant nevi is not known. (Editor's note: As of 2004, it seems that partial removal INCREASES the risk of melanoma because it traumatizes the remaining cells.)     We have had members die of melanoma who had their nevus left “as is,” totally removed, and partially removed.

What we need is unlimited amounts of instant, natural-looking and -functioning skin with normal sweat and oil glands and that curvy, padded layer of fat underneath it all and no abnormal cells left in the brain or spinal cord and no other associated conditions either. In other words, “pouf, it’s gone!” as one member, Helga, terms it. But clearly such a treatment doesn’t exist at present. And no one yet knows what causes a giant nevus, let alone how to prevent it from happening. (Editor's Note: As of 2004, the cause may have been recently discovered. See possible cause found.

   Current surgical treatments are often needed for certain types of giant nevus, especially those that are associated with skin tumors, are weeping, bumpy, folded, or have open sores or areas suspicious for cancer or are associated with other conditions which are treatable. People with rather small giant nevi, such as half a back nevus, and no satellites can have their nevus fairly easily removed with skin expanders. People with facial nevi generally opt for removal because of the constant stress of “showing.” But for some of us, especially those with giant nevi which cover huge skin areas, there just isn’t any good treatment that exists at present. Sometimes, we are better off with the nevus left “as is” because the scars are worse than the original nevus. This must be determined by the doctors on an individual basis, of course. Obviously when newer treatments appear, we do need to become guinea pigs and try them, in order to help the ones who come behind us. There were many people who acted as guinea pigs ahead of us who helped us. (A big thanks to those who tried cultured skin and integra-type skin, for example, even those most have not had success with them and several have had them removed from their children.) But retrying the same old unsuccessful treatments can sometimes leave us worse off than before.

It is a bitter pill to swallow, but some things ARE unfixable. Perhaps Charles L. Mee, a polio survivor, said it best in his book, “A Nearly Normal Life:” “The notion that any problem can be solved with will, determination and ingenuity certainly helped build the strong, powerful nation America had become by the time I got polio. (Editors’ note: the same idea also exists worldwide.) It continues to inspire successful, expansive business enterprises and individual lives. It helps people get through the day…. And yet the refusal to recognize the possibility of failure, the refusal to accept the tragic nature of life and the knowledge that all problems do not have solutions…. produced an entire subculture of denial and shame…a culture in which failure is swept under a rug, where death is denied, where we undertake extravagant attempts to fix the unfixable in hospital rooms….and where those who object to this must feel themselves judged to be wanting….. “ So until we find a way to fix the presently unfixable, some of us nevus people may just be better off left “as is.”


Just a Regular Guy--With Something Unusual up his Sleeve!

All nevus stories begin at birth. I was born in Ireland in 1967 with a giant congenital nevus covering my left arm, from my shoulder to my wrist. It was dark brown in color and covered in hair. Considering that the odds of being born with a large nevus are so low, and this was a relatively small rural hospital, I’m sure the doctors had to search through some dusty medical dictionary to be able to answer the many questions my parents must have had. I also have just one satellite—nickel-sized and located on my right leg.

I’m not quite sure when I first became aware that I was different from everybody else that I knew. My first memory of my birthmark was when I was around 2 years old and I pulled my arm out of a cast I had to wear after my one and only surgery. The plastic surgeon had operated on the nevus around my elbow, leaving me with scars there, apparently as an experiment to see how deep the nevus skin was. It was not a thin layer as he had hoped. He told my parents that he could do a series of skin grafts when I was older, around seven years old, if that was what I wanted to do. As I approached that age, my Mother gave me that option. When I learned that skin would have to be taken from my buttocks and grafted on my arm, I decided that it was not worth it.

As a child, my mother routinely removed the hair from my arm, which made it more presentable if not less noticeable. As I grew older, I gradually became more aware of being different. By the time I was a teenager, I became very conscious of the stares and the curiosity I would evoke when my arm was visible. I made every effort to conceal it. If I wore long sleeves, nobody saw it and I was just like everybody else. The Irish climate is such that it is not necessary to wear short sleeves in the summertime, so it was easy to keep my arm concealed most of the time. I avoided situations that would allow others to see it. I shied away from sports (this was easy, as I was not very good at them anyway). I felt particularly uncomfortable at the beach when my arm was on display. I could divide the spectators into three categories: those who did not notice my arm or pretended not to notice it, those who stared at it but did not say anything, and those who looked at it and asked me what it was. I preferred the last group. When somebody asked me what happened to my arm, I was always happy to respond. Once they knew what it was, they moved on and I felt accepted. My birthmark was not something we discussed very much in my family. It was “out of sight-out of mind.” I generally considered myself to be a regular person. I did not think about my birthmark every day. My greatest fear was that I would be rejected because of it. As a teenager I was somewhat reluctant to approach girls because of this fear. I had to be sure that this would not happen before I went any further.

I was 30 years old and living in the U.S when I decided that I wanted to know more about my hairy brown companion, always at my side. I first went to a dermatologist who appeared to be somewhat stunned by what he saw. He talked about the risk of all types of cancer. He even suggested that I have all the mercury fillings removed from my teeth. I decided to ignore his extremist views and I started to investigate on the Internet. When I found the Nevus Network website and others dedicated to this subject, I finally found the information I had been looking for. I learned that my nevus is called a sleeve nevus, because of its location. I found other adults with situations similar to mine. I even found somebody with a sleeve nevus almost identical to mine. I now look at myself as one of many people who have GCN rather than just an individual.

How times have changed since my parents first saw my nevus. The internet can instantly provide information to parents eager to learn more about this condition. It can also bring them together in a forum to discuss their options with other parents who have already experienced various forms of treatment. I do wish that these parents had an opportunity to meet an adult living with a GCN before they choose whether or not to proceed with any form of treatment or removal. While every case is different, living with a GCN is an option worth considering. At this stage of my life, I am perfectly happy living with my nevus. The dark brown skin is now light brown and much of the hair is gray. If I were granted 3 wishes, I definitely would not waste one on making my nevus disappear. I am sure that I made the right decision to not do skin grafts when I was 7 years old. I am now 35 years old. I live in New York’s Hudson Valley with my wife of 13 years and our 2 children. I work in the field of telecommunications. I consider myself to be a regular guy, a husband and father--with something unusual up my left sleeve!—Liam O, New Paltz, NY.


Editors’ Corner

After four years, we are very happy to finally publish our 12th newsletter. As you know, the Nevus Network is staffed entirely by unpaid volunteers. We all have other lives besides our “nevus” life and time certainly flies by…. We have grown so large that mailing out a newsletter is a huge, expensive task that takes several months of preparation and costs about $1,500 for supplies, copying and especially postage. If you would like to receive your newsletter electronically in the future, please let us know. Donations, including stamps, are always needed, especially right now! We would like to thank Tracy & Sal R. for their very generous donation to the Nevus Network. We are in the process of revising our information sheets, our website, and our penpal database. Please check the website www.nevusnetwork.org for updates.

We are also planning on officially publishing the results of our member survey, which many of you have filled out over the last four years. If anyone has not yet filled out a survey or would like to update the information in their survey, please contact us. This will minimize the time and money we will have to spend contacting you for updates. We would like to publish the most accurate health statistics for all of our members, so that parents and nevus people have as much information as they possibly can. We have lost contact with many members and the Nevus Network itself has moved. Please note our new mailing address: PO Box 305, West Salem, Ohio 44287. If you know of anyone with a giant nevus who is not on our current mailing list, please encourage them to enter our database, so that our statistics are as accurate as they can be. We are always looking for volunteers, so feel free to contact us if you would like to help. Have a great summer! --The Editors, BJ and Kelly

Please—-pretty please--help us by keeping your contact information current. We have already lost contact with 108 people with a giant nevus. The more accurate our database, the more accurate the statistics we will be able to provide to you so that the information you get is as up-to-date as possible. Just e-mail us your updates at info@nevusnetwork.org or call us at 419-853-4525 regardless of what other nevus groups you join or where you live worldwide. If you would like penpals, please be sure you fill out the forms on the next pages and either mail or e-mail it to us.

Penpal Program

Because the Nevus Network is so large in size now, we needed to simplify our method of providing penpals to those members who request them. We apologize to all those who requested penpals and have not yet received them because we are simplifying our matching procedure. If you would like penpals, please fill out the penpal request form on the next two pages of the newsletter and either mail your request to us or e-mail the information. Even if you have previously requested penpals, you MUST re-submit your request so that you are in our new penpal database. We will try to accommodate all requests. Penpal information is used only to match other penpals and released only to other penpals. The Nevus Network does not screen penpals in any way, of course and you must take full responsibility for any involvement you have with people you meet through the penpal program. Please respond in a timely fashion to all penpals, as many are eagerly waiting for mail! We’ve all made some great friends and found much helpful support this way and we are happy to continue this great service.

Yes, I would like to receive penpals.

_______Similar in age

_______of the same gender

_______in my area

_______with a similar type of nevus

_______undergoing similar treatment

_______and I am sending the info needed on the next page.



Join the Nevus Network

Nevus Network PO Box 305 West Salem, OH 44287
Ph: 419-853-4525 or 405-377-3403
web site: http://www.nevusnetwork.org
e-mail: info@nevusnetwork.org



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